The adage that “It’s not what happens, it’s how you deal with it” certainly applies to our wonderful client Frank Cesario. He and his wife Sally have faced some significant challenges during their 44 years of marriage, difficulties others might have found overwhelming, but their courage and perseverance in dealing with the obstacles life presented is an inspirational story we wanted to share.
Frank grew up on the west side of Chicago in the 1950s, working alongside other family members at his father’s retail store until enrolling at the University of Illinois at Chicago. Frank and Sally met as young teenagers and married in his senior year at UIC. After his graduation, he entered a management training program with retail giant Montgomery Ward. During his 15 years there, Frank worked his way up to textile buyer for the chain. He spent the next 25 years in sales for textile companies until he was diagnosed with multiple myeloma, a treatable but incurable blood plasma cancer with a typical 2-4 year prognosis. Frank had a stem cell transplant in 2011 and must undergo grueling monthly chemo sessions. He knows he will suffer repeated relapses, yet his spirit is unbroken. As he says, “I’ve come to accept the diagnosis as my new normal.”
That positive attitude is typical of how Frank has dealt with life’s unexpected difficulties. Frank and Sally have two grown daughters; both are married with two children of their own. Their oldest daughter Dana was born with learning difficulties due to a genetic defect. Her youngest child, son Alex, was born with the same defect, a form of Rett Syndrome. It’s a progressive neuro developmental disorder that can be described as a combination of epilepsy, cerebral palsy, autism and Parkinson’s disease. The disease is found almost exclusively in girls, so Alex’s case is most severe because boys with only one X chromosome usually do not survive birth. Alex cannot walk, talk or eat solid foods. He takes multiple medications for seizures, has gastrointestinal and respiratory issues and cognitive impairment.
Now 7 years old, he is wheelchair bound and requires care 24/7, which creates a huge family burden because of his mother’s limitations, as well as those of her husband, Adam, who spends long hours driving a delivery truck. The family also includes a normal 10-year-old son, Zachary.
Frank and Sally created a Special Needs Trust for Alex to help with his needs, which will only increase as time passes. The couple also help out with the various medical and administrative issues associated with Alex’s illness, which is necessary because his parent’s lack substantive organizational skills. As you might imagine, there is a mountain of paperwork to navigate.
As Alex grew, getting him into and out of his wheelchair became more difficult. Frank and Sally loved helping take care of Alex, but Frank’s illness has weakened his back and he is unable to lift more than a few pounds. In response to the problem, Frank decided to sponsor a fundraiser in hopes of raising a few thousand dollars towards the purchase of a wheelchair accessible van. Although he had no fundraising experience, Frank did his research. He and Sally worked six months, with the help of family and friends, to get Alex’s story out in the community. “The response was unbelievable,” says Frank. A local theater owner donated the facility as a venue for the fundraiser. Over 550 individual donations poured in, as well as 250 business donations, the majority from people who didn’t even know the family. The event generated an amazing $92,000, which allowed Frank to purchase a slightly used conversion van and have a little money left over for other expenses. Every Saturday, Frank uses the van to drive Alex to a facility that provides Hippotherapy. The horse’s walk provides sensory input through movement, which is variable, rhythmic and repetitive for children with sensory deprivation.
Adds Frank tearfully, “The encouragement in the many notes we received with the donations was so gratifying. It shows you what good hearts people here have.”
One of life’s ironies is how different children can be from one another, despite coming from the same gene pool. Frank’s second daughter Carrie was born without any of the medical issues afflicting her older sister. She received all As in high school, was an All State athlete, earned a college scholarship and today is a successful Doctor of Pharmacy with two healthy children, Luca and Anya. She lives nearby with husband Roman so Frank gets to spend plenty of time with the grandkids. “Both our girls were great kids and grew up to be sweethearts,” says Frank smiling, “and it’s amazing how good they both are as mothers.”
Frank muses, “Sometimes I hear parents or grandparents get upset because their kid struck out in baseball or didn’t score a goal and I think how lucky they are just to have healthy children. Alex has been through so much: uncontrollable seizures, multiple trips to the ER, a week stay at Mayo Clinic, more problems than most parents could imagine. I want to tell them not to be concerned if their child isn’t a star athlete and to be grateful to have a child that’s just normal and healthy.”
Last year, the whole family spent a week in Florida at Disneyworld courtesy of Make a Wish Foundation. They were guests of Give Kids the World Village, a spectacular 70-acre nonprofit resort near Disneyworld and other attractions. Frank fondly recalls how Alex and the whole family were “treated like royalty” at the resort, run mostly by volunteers. “We stayed in a beautiful villa, received passes to all the attractions, all our meals and even had the use of a wheelchair accessible van all week. The characters from Disneyworld and Universal Studios came by to visit the children in person and professional photographers took pictures and presented each family with a CD to take home. The best thing about the trip for Alex’s older brother, Zach, was the resort’s ice cream shop, which stayed open from 7am through 11pm daily. He was in there slurping ice cream every chance he got! It was a magical week none of us will ever forget. I donate to them every year in appreciation.”
Alex is attending his first year of all-day school now. He occasionally has a bad day and Frank will be called to come pick him up, take him home and comfort him. “He’s usually fine the next day and so back to school in the van,” laughs Frank.
Happily, Frank and Sally get an occasional break. “Even though I can’t do some things anymore, walk very far or stand too long, we share a Florida condo with my wife’s siblings so we get to spend some time there relaxing each year. Matter of fact, we’re leaving Chicago for some Florida sunshine next week,” enthuses Frank.
We feel so very fortunate to have Frank and Sally as clients. They are truly special people. Their indomitable spirit is an inspiration to all of us, as well as a reminder that we should cherish every day of our lives.
Disclaimer: Client profiles are for inspirational and/or biographical purposes only, it is not a statement as to whether or not the listed clients approve or disapprove of the advisor or the advisory/brokerage services provided.